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Posted on Mon, Jun. 17, 2002  
Autistic child's family finds hope in Silicon Valley

Knight Ridder Newspapers
 
KRT NEWSFEATURES

(KRT) - Wata Kobo, 7, of Campbell, Calif., is inches away from the TV as he watches a video. He was diagnosed with a mild form of autism at 2, and also has a fascination with repetitive motion, like train wheels.

In the scramble of a San Jose school playground, little Wata walks by himself to a lone tree, retreating far away from the mad dash to recess.

He starts dancing, his legs jerking from side to side in an awkward dash, almost as though the 7-year-old is trying to get rid of fire ants climbing up and down his pants. He kicks and hops, his face crunched in concentration, trying to shake off frustrations he can't put into words.

With his autism, Wataru Kubo is like a perpetual foreigner, trying to make his way in a place where he neither understands nor is understood. Most of his emotions and thoughts are a mystery to almost everyone around him.

His mother and 10-year-old sister are his main bridge to the world, even as caring for him has strained their connections to the rest of their lives. They are an ocean away from home, having left behind their family's native Japan to find help for Wata in Silicon Valley.

The Kubos, along with many families of autistic children from Asia and the rest of the world, are increasingly choosing to leave their countries for Silicon Valley's better medical and educational services. Their expanding community reflects the rise in autism cases and the escalating public response: As the number of autistic children grows here, so do innovative assistance programs.

"In Japan, it's very difficult," said his mother Yumi, 37. "In every single area for autism, it's worse than here, so I'm very happy to be here."

There are no available statistics on how many families immigrate here just for autism services. About 16 percent of autistic kids in the social services region that includes Silicon Valley speak a foreign language as their primary language, according to state figures. Their families come from all over the world, but primarily Asia - including China, Japan, Taiwan and India_where the stigma of such disabilities is often strong.

"In Japan, they would focus on what he cannot do," Yumi said. "But here in America, they focus on what he can do."

Decision to stay

Yumi moved to Campbell in 1989, when her husband's work brought him to the San Jose branch of his company. Both children were born here.

Three years ago, when Wata's father returned to work in Tokyo, she decided to stay and keep Wata and his sister, Kaho. With the exception of a few visits by her husband a year, she raises the children by herself.

The first time Yumi noticed something different about Wata was at his first birthday party. Unlike other children who cannot wait to blow out candles or tear open gifts, Wata was totally disinterested.

She always knew her Wata was different, she said_different in a special way.

"He was a serious boy," said Yumi, whose concerns grew when his facial expressions disappeared after he turned 18 months old. "He didn't smile or laugh."

She started doing research and taking Wata to doctors, but none could verify her suspicions. When Wata was diagnosed with autism at age 2, Yumi said she was not angry, sad or disappointed. She was relieved that she could do something to help.

"The most important thing is that he's my son," said Yumi. "And his diagnosis doesn't change that."

Wata was diagnosed with mild autism. He tends to shut everything out, unless people or new experiences purposely try to come into his world. Then, if presented with a routine or type of interaction he likes, he slowly opens up, asking to be tickled or starting up a brief conversation.

He has his "Wata-isms," as his mother calls them, such as getting quick crushes on girls he meets or refusing to believe that toy trains can't be purchased at all hours of the day and night. He stares at the TV from only inches away. He runs away from home, seeking train wheels to watch go around and around.

In autism, common behaviors include receptive and expressive language problems, repetitive behaviors, sensory abnormalities and difficulty with normal social development. For example, sensory differences may cause the child to crave one type of sensation over others. For Wata, this may cause him to want to watch something obsessively, like train wheels. At other moments, he may crave touch, like wanting to be tickled.

Craving consistency

Like many autistic children, he craves consistency and has a fit if order is not followed. He does not like any kind of change, including how his shoes are organized, his homework is stacked and his hair is cut.

When the family went to Disneyland, for example, Wata could not stand to be around so many people and started screaming. If Yumi had yelled, Wata might have misunderstood and thought she was mad at his very existence rather than his actions. To calm him, Yumi did something that might upset most children: She turned him upside-down, head on the ground and legs up. The change in spatial position and her touch quieted him.

As a result of his different perceptions and reactions, Wata is often misunderstood. One time at school in his special education class, his coloring book got mixed up with another boy's book. The other student didn't notice and the two struggled when Wata tried to get his book back, prompting Wata to punch him. Because Wata could not explain in words what happened, the teacher quickly banished him to a desk away from all the other students.

Currently, Wata's program at Latimer Elementary School is tailor-made for him. Every student in his class has their own workstation with assignments designed for their differing levels of disability. There are eight students in the special education class, and occasionally they join a regular first-grade class to get them used to interacting with other students.

Five years ago, Santa Clara County started three classes under the Autism Project, an education program at regular elementary schools just for autistic kids. To qualify, children need to be residents of the county. Now there are 30 classes in the county, with two aides and one teacher for every eight students. There is also support from an occupational therapist, speech therapist and a parent advisory group.

Veronica Spektor, Wata's teacher, carefully tracks each student's progress, and keeps record of everything in individual binders. Every activity, including snack time, is turned into a learning experience.

"Don't you know that eating is a great opportunity for learning?" said Spektor.

During snack time, Spektor pulls out several bags of chips, popcorn and gallons of apple juice. She sets money in different containers in front of Wata and the other students. In order to eat, students must either pay or ask for the snack in a certain way. This way, they can practice communication and math skills.

"Can I have popcorn pleases?" asks Wata, who was working on plurals and tended to pluralize everything.

"It's please without the `s,' " corrected Spektor, who then asked for 50 cents in quarters.

Instead, he counted five dimes. Because five dimes is much more complicated to count out, she gave him a high-five. Wata smiled.

Complete devotion

Raising Wata is a full-time job, and Yumi devotes everything to him. He is like an unsolved puzzle for her. With each mystery she figures out, she smiles triumphantly that she has cracked his world that much further. His days are filled with tutoring, by teachers or by Yumi, and she is constantly running after him, cleaning up the trail of toys or clothes he leaves in his wake.

"Eighty percent of my pleasure comes from Wata," said Yumi. "Everybody has an ideal life, I just had to find a different one."

Effect on daughter

She often worries about not spending enough time on her daughter, but adds that Wata's autism has taught 10-year-old Kaho more patience than other children her age.

"She never gets upset at him," Yumi said. "She was born that way, with a warm heart. She just wants to be a good kid and not give her mother hard work. If she had been the only child, she would not have had such good qualities."

And Kaho is very open about her brother. She doesn't shy away from telling her friends about him. In many ways, she is very proud of him. Her favorite moments are when he eats up her words while she reads to him in the car.

"I kinda like his autism," said Kaho. "It's easier to hang out with him, and unlike other little brothers, he doesn't ask too many questions."

Wata's favorite pastime with his sister is getting tickled. He will often march right in front of her with the demand, "Tickle me."

Some experts caution that seeking out a particular place for autism help may not work for every family.

"Many come here from other places, hoping for a miracle," said Dr. Bryna Siegel, a University of California-San Francisco psychiatry professor who has been working in the autism field for the past 30 years. "They say, `If only I do this, if only I do that, then I can make all the difference in the world,' but no matter what the parent tries or how variable the treatment turns out, it has to mostly deal with what is going on in the kid's brain."

But for Yumi, it was the right choice. Life in Japan would have been different, she says. Wata, a first-grader, is learning vocabulary and subtraction at the second-grade level. But in Japan, Yumi doubts he could have learned either.

"Since not many people here understand autism well, when autistic people attend school or work at welfare facilities, staff can't figure out how to cope with them," said Shinichiro Furuno, the honorary president of the Autism Society of Tokyo.

Yumi describes it as a chicken-and-egg problem.

"Parents feel ashamed that their child is autistic and may not help out," said Yumi. "So education does not develop."

Yumi's friend Chiharu Matsunami said that in Japan people don't want to stray from the status quo. Differences, whether good are bad, are looked down upon, because people strive to be the same.

"It makes it more difficult to be included," said Kazue Lowenstein, who leads a Santa Clara Japanese support group for children with disabilities. "Still, people with disabilities are considered different than others, whereas in society in the States more people are included. They consider disability another personality."

Support group

To support other Japanese parents, Yumi joined Parents Helping Parents, a non-profit organization of parents with disabled children helping other parents with disabled children. Their Japanese Support Group Facilitator is Lowenstein, who emigrated from Japan to provide her two disabled sons with better schooling.

"The Japanese schools did not help, so they suggested that I move here," said Lowenstein, who has facilitated the Santa Clara group for seven years. "With the special education in America, my boys received full support and really benefited."

Lowenstein hopes to one day bridge the gap between Japan and America in autism. She has already brought many Japanese officials to Santa Clara and is planning an internship for Japanese students to study in America, to bring back knowledge about autism to Japan.

Yumi's advice for parents of autistic kids? "Don't hide how they are," she said. "If so, society won't understand how they are, and you will feel more miserable when people treat you and your children badly."

And with research under way, one day Wataru's world may be cracked open. But not a second goes by that Yumi asks why this had to happen to her.

She simply says, "I am very blessed."

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For more information about PHP, contact Kazue Lowenstein at (408) 727-5775, extension 165, or visit www.php.com.

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Contact Marian Liu at mliu(AT)sjmercury.com or (408) 920-2740. Fax (408) 271-3786.

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© 2002, San Jose Mercury News (San Jose, Calif.).

Visit Mercury Center, the World Wide Web site of the Mercury News, at http://www.bayarea.com/mld/mercurynews

Distributed by Knight Ridder/Tribune Information Services.

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